About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, April 13, 2012

But Wasn't Easter LAST Week?

Painting by Boris Kustodiev, with Kulich and Cheese Paskha in the background.

I finally understand why in Victorian and Regency England, which I’ve read about as far back as I can remember, women of means had a day each week which was designating as their "visiting" day.  A "lady" might declare by some reason which day (or days) it was that she would receive visitors, with reasons and rules so complicated that my fibro brain cannot recall all the aspects as to how this was decided, and I do not have the energy to do much research about it, simply to make a few points in this post.  (Sorry! Fibro brain and weary CFIDS body, unfortunately, rule.)  

But I always found the concept of a visiting day and the etiquette involved fascinating because it was all so multi-faceted. The butler, of course, was there to accept a visitor's card on a special tray if the lady of the house wasn’t "in," even if she was, actually, at home. There was the placement of the card on a special tray and I always loved all the wonderful crazy-sounding details as to how the card would be placed, if there was a fold put on the card, and if so, in which corner it was made.  Like everything else in Victorian England, all had a symbolic meaning, from the flowers that whoever gave to whomever, to the "simple" art of calling on one another.

Well, today I suddenly, finally, really and truly understand the beauty of the visiting days and calling cards.  I’ve been feeling extremely "awful" (what other word describes so much?) this past week, the second one after my run up to get my hair, etc., done.  I’ve had my traditional Russian Easter recipes lined up and a list of groceries made up for hubby to buy from our local Kroger’s, as well as from the little Italian store that I suddenly realized might actually carry the farmer’s cheese for the "paskha" I would be making.  (I wouldn’t actually know because I’ve never been there and I haven’t been to a Kroger’s in at least two years, mind you.)  Hubby had found the missing Paskha mold a couple of weeks ago, which, I tried to convince myself, was a promise that somehow I would indeed be able to make the traditional Russian Orthodox Easter foods this year, that my adrenaline would, indeed, finally kick in. 

And it’s been especially significant that I do the traditional cooking and baking this year, as a symbol, if for not other reason. Last year, the first year I skipped this ritual in the 37 years I've been married, we were at the "major medical center" with my daughter just as my hubby was at our local hospital for a relatively minor operation - an emergency surgery that he was taken into just as my middle child and I were trying to catch up with the ambulance taking our daughter up to the medical center hours away from us with yet another death crisis.  Given that it was hubby’s first time in a hospital ever, that he was so worn out from running to and from hospitals and work, that his condition had become so "advanced" that they kept him in the hospital for several days, I was feeling really guilty that hubby was in the OR while my middle child and I tried to figure out what was going on in another city with my daughter. There is no end to reasons for feeling guilty if you’re a mom - it simply comes with the territory. I had to deal with some very ignorant doctors – monster arguments which even frustrated our principle doctor, her surgeon - who simply would not listen, teams of docs coming in and out….  Let’s just say, it was an awful time which, hopefully, someday we’ll all be able to laugh about.  I remember writing to a friend that no, this year I’d not made the cheese paskha nor kulichi and that if someone had spoon fed me those foods just after Easter Sunday as we had finally arrived home, I would not have been able to hold the food in my mouth and swallow, I was that overwhelmed, worried, depleted and exhausted.

But last night I had a melt-down.  I no longer remember what it was about, nor does it really matter. A lot of (relatively) little things went wrong and by the end of the day I couldn’t take it and just lashed out.  Hubby and I both realized that the reason for the disagreement had no relevance to the argument.  We both realized that it was because I was still upset that the appointment with my new sleep doctor had to be cancelled last week and that I was having a particularly harder time recovering from my "beauty day" than either of us had anticipated.  But the final blow: we both realized that with each day that passed this past week and me still not able to take a shower nor wash my hair, my sleep cycle being no sleep cycle at all but catch what catch can, the chances were getting slimmer and slimmer that I’d be able to do any Easter baking and cooking.

And just now, the blow that really hurt, though I’ve not decided exactly how and why.  Hubby really hated to ask me this since he knew how this would hit me.

But first, let’s go back a few years.  Ok, more than a few years, back to Easter 1988 or 1989, thereabouts.

In the Russian Orthodox Church, to put it simply, we do nothing the easy way.  We don’t even have pews in the church, and our Sunday liturgy goes on for a good two hours.  Depending on how slowly the priest speaks or how fast the choir sings, the liturgy can go on for way over two hours, and often does. There are folding chairs around the sides of the church, for those so sick that they have to sit down.  Given that there are women who are 90 years old and they do not sit, even when I was pregnant, I never had the nerve to use one of those folding chairs.  Don't even argue with the senior crowd on how "hard" this is because they are the first to point out that we "Americans" can go to cocktail parties and stand the whole time without feeling any hardship.  I guess point taken?

But doing everything the hard way seems to be our creed and I think we perversely enjoy it. That’s not to say that we don’t enjoy ourselves. We come and go all willy-nilly, in and out of the church.  Oh, we don’t turn our back to go out, it would be disrespectful to God to do so, just as it is too disrespectful to sit in His presence (hence, the no pews).  But we sure do a lot of walking out of the Church backwards and go out to have a bit of a first round of "catching up" before the end of the liturgy, whenever THAT might be.  For those of us under the age of 60 or so (because those are the ones born here, so we’re the radicals!) we try to time our getting to church after the Apostles’ Creed, yet before the Lord’s Prayer. Growing up, I always liked to arrive after the Lord’s Prayer since I still had enough time to get sick from the incense, pass out from the heat of so many people in such a small environment, but my mom always preferred risking me passing out or barfing, so before the Lord's Prayer it was.  When my kids were in Russian Orthodox camp, they used to love to keep count of the "fall and barf" tallies and still remember those days of standing in the sun very fondly.  How can you not love such a church? What traditions!

Anyway, it was Easter of 1988 or 1989.  On the whole, we tried to make an effort to go to our local Greek Church as regularly as we could, especially given that I was usually too sick to go to church and poor hubby, who took the kids to church was neither Greek nor Orthodox, puzzling and confusing some congregants, rightfully, to no end. This was all because I had yet to find the RIGHT Russian Orthodox Church that would do - we’re all full of various factions, as to which immigration "wave" we’re from, the kind that has "Outside of Russia" included in its title, etc.  "Our kind" could never accept the pews. Thank God the Greeks, and Ukrainians as well, have gotten over the pew issue for the most part. There’s a Ukrainian Church in town, but it’s a Ukrainian Orthodox Catholic Church. You’d think that would be a great compromise for me, given that my hubby is Catholic, and really, I am ethnically Ukrainian, but for all too many reasons, I feel closer to God in a Greek Orthodox Church.  I know: this is precisely the kind of thinking that has had nations go to war with religion at the center, throughout history, and will continue to, I am sure.  But understanding that hasn’t changed me much!

Anyway, I’d been feeling very far from my roots and that Lenten season I decided I would prove to God how much I loved Him and my church by doing the whole Lent bit.  I so love the relatively new word "vegan." Growing up in the Virginia years of my life, I would always have to explain to my friends why I couldn’t eat anything animal during Lent. This took a lot of explaining and I've never really understood how much Protestants understand the concept of Lent. My one Protestant experience was a Seventh Day Adventist boarding school (long story) and since we didn't eat meat there, that became a non-issue for me come Lent that year.  The Virginians of that early era, however, certainly didn’t understand the concept of no milk, cheese, nor eggs. The no-meat was a bit weird to them, but hey, I was a "Russian" and they all knew that the Russians were a dubious group at best.  In fact, most were often left scratching their heads over how I could be a "Red" or "commie" and someone who went to Church regularly. (And no, for those not used to my occasional sarcasm, I am not, nor have I ever been, a member of the Communist party!)  Enlightened, Hopewell, Viriginia in the early ‘60’s was not, a place that had little patience even with Catholics, so the rest of it was way over their heads. Now all that is covered by the word "vegan" and that, in and of itself, makes you sound so virtuous and admirable almost - even in a society that often simply gives up chocolate for their Lent.

So feeling that particular year that I would do the whole Lent bit, I went "vegan," normal Russian Orthodox operating style.  Understand that my doctors, who were still not sure what was wrong with me, but knew I was definitely sick because by now I’d had two abnormal spinal taps and was in the hospital approximately every two weeks, each time for a two-week stay, had long ago given me strict instructions that I was not to do any Lenten dietary restrictions.  But what do doctors know, right?

That Lenten season, I was feeling so virtuous, and looking kind of good, weight wise.  The kids ate their normal diet with a few restrictions I’d thrown in, the same for them as with how I was raised. But I felt my doctors were wrong about the dietary restrictions because my grandparents, who had died in their early 90’s at a time when people just didn't live as long lives as today, adhered to every one of the four Lents the Russian/Ukrainian Orthodox Church "required."  Besides, my philosophy went, I was made of strong stock: if Lenin/Stalin and then Hitler couldn't kill us, then what harm could going "vegan" possibly do?

I wish I could remember what the heck happened.  Honestly, after so many decades of being sick it’s hard to remember which year was dominated by what, but it had to have been bad because late on Good Friday after church, I was admitted to the hospital from the ER. The next day my doctor came by.  I have to admit that he and his wife were our very good friends so he had a heads up on what was going on in my life, as well as in my head.  I think he probably realized he’d had no meat the last few times he’d had a casual meal at my house and that going to dinner at his house, I’d not had any meat.  Actually, he had given me an informal lecture about it, but I decided to turn a deaf ear.  

So, my neurologist walks in the room, steam practically coming out of his head, and opens with, "do you realize I’ve seen Bowery bums in New York with better blood results than what I just found with you?"  And thus another lecture began.  "I've just spoken to the dietician and they are sending up a hamburger right now, and you are going to eat it." Given that it was about 2:00 in the afternoon on Holy Saturday and that Lent officially ends with midnight, when Russian Orthodox congregants all over the world stop and say (in their various time zones, of course), "Christ has Risen" and we all repeat, "Truly, He has risen," I really wanted to negotiate those final hours. 

"And no! No eating some broccoli with some cheese slapped on it will do," he preempted me, knowing exactly that I would try to get past the meat part.  Until then, other than a few Lents when I was really sick or pregnant, I did manage to be vegetarian. We bickered for a while, him trying to make me understand how truly sick I was, me trying to explain that the damage was done, him trying to explain we were talking about me being close to death here.  Sheesh!  What drama!

Finally he left with the words, "and God help you if you don't eat that hamburger when it arrives here. People are going out of their way to deliver that to you - the least you can do is eat it when it gets here.  You’re not out of the woods yet, but you don’t need to sabotage yourself further."  

Oh yeah, he had me shaking in my shoes: not!  With that he departed, me wanting to say, "Duh, I know this is bad…you have how many IV’s running through me right now???"

Finally, the hamburger arrived. I looked at it dubiously. It didn’t even look very good, adding insult to injury about breaking the fast.  My gosh, I thought, at least I should be "cheating" with some meat that looked and tasted heavenly (pardon the pun) not with a burger from a hospital kitchen.  Deciding that I wouldn’t be able to put it off much longer and that my nurse would soon arrive to see if I had eaten the darn burger, I took one bite in my mouth and started chewing and…

…it tasted awful.  But worse, I looked up and there was my priest!   Bless his heart, but he thought he’d run by my room quickly before the whole Easter process started at 11PM.   At our local hospital the beauty is that it doesn’t matter if you want your local clergyman to stop by or not: they do so anyway, regardless of what you check on your admission form.  At the "major medical center" I hunted for the chapel many times, followed arrows and after seven long stays, can tell you that I never found it.  But in our little town, by golly, you got your clergy whether you wanted to or not – and I love that.  When we asked for a clergy person in that medical center, it was only with the "Palm Sunday" visit that we had anyone come by.  Sorry, but I happen to think that when in a hospital, clergy should be accessible if you want to go that route too, especially with the principle that "there are no atheists in the trenches," and I certainly do like my clergy there, although perhaps not so much in that particular year on that particular Saturday just hours before Easter.

I looked up at the clock and saw that it was 6PM. I was only six hours away from having done Lent "the right way."  So close and yet so far, you might say.  Father didn’t bat an eye and made the motion that I should keep eating, and prayed over me as I choked on that burger. We’ve never spoken about it but I’ve always wondered what went through his head that day.  I’ve never even had the nerve to see what Lenten restrictions the Greeks hold.  None of it mattered, of course.  God knew what was in my heart.

And that’s what hurt, because I KNEW what I had in my heart. I was actually trying to probably make a deal with God and I should have known from my Orthodox upbringing and my Catholic education as well as my one year of living the Seventh Day Adventist life: God doesn’t make deals.

And so today, when hubby asked me the question that made me go into a tailspin again: our new priest, whom I met sometime just after the new year, not too long after my daughter had had her (we pray) final surgery when we asked him to come bless our house, called hubby and asked if he could come by and bring Holy Communion for me.  We’d had a rather long discussion when he was here that January day (the poor man: we didn’t realize that he and his wife had just had their first baby weeks ago) and he learned how badly I felt that I couldn’t make it to church on Sundays.  

But how to explain that you feel so sick that you can’t have someone come up to give you Holy Communion in your own home on that most holy day in the Eastern Orthodox Church?  That’s a hard one – for me.  It’s my baggage, I know.  I have to get over it, I know.  I know that I need to remember that God knows what I believe.  I have to believe that I’m doing the best I can.

But today I sure do wish there was a butler at my door who could have taken the priest’s card and told him I wasn’t in to see visitors that day.  Hubby will have to do it for me, since he’s the one who spoke with my priest in the first place, and I don’t envy him that. Both understand, I know, even as I try to put on a brave front and wish things could be different, feeling guilty because my daughter is now healthy.

And because the big things ARE good.  But it sure hurts to not be able to join in with traditions you so love and believe in.

(Христос воскресe, Christ has risen!  This to those who do celebrate Easter, but most years have to wait the extra week or weeks after the rest of the world has celebrated their's.  Bring on the sugar, meat and dairy products and ENJOY!)


  1. The BEST thing that comes from celebrating these holidays after everyone else......ALL THE SALES!!!! lol :-)